Why So Little Awareness?

Discussion in 'Awareness & Fundraising' started by Candy, Sep 3, 2016.

tinnitus forum
    1. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Governments, health authorities have no interest in spreading an awareness message... Tinnitus is not a burden on services, as opposed to smoking, diabetics, alcohol, heart disease... Because no money whatsoever is spent on it (given lack of treatments).

      Do we need to become more burdensome, claim disability allowance and so on???
       
    2. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      You're not accounting for the billions of dollars spent by the VA alone?
       
    3. The Red Viper
      Angry

      The Red Viper Member Team Research

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Leftover infection ETD + neck muscle injury
      I hate to play identity politics here, but the only reason you and people like us are clamoring for awareness is because we have the condition.

      I would wager that even us on TT don't take the slightest amount of time thinking about other diseases not as well known, such as chronic fatigue syndrome, simply because we don't suffer with them.
       
      • Agree Agree x 1
    4. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      We suffer but so do teens - thinking about the younger generation and lack of awareness worries me. ME, CFS are all extremely debilitating and have lots of committed bloggers raising awareness, with their inspiring stories.
      Tinnitus to my surprise has none. Most disease advocates are sufferers, related to sufferers or work alongside sufferers. The head of phines4u has set up a charity for Lyme Disease suffers after he and his family contracted the disease.
      Of course as u say there is personal interest here, for my kids, me as a mother and my fellow sufferers.
       
    5. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Sorry VA meaning, veterans - not aware this is happening here. This is an extremely valid point I had 't considered.
       
    6. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Now if only half of those billions were used to fund research instead of paying for an unproven treatment...
       
      • Agree Agree x 1
    7. Penate

      Penate Member

      Tinnitus Since:
      07/04/2015
      This is the ONLY horrendous condition in the world that doesn't have treatment.
       
      • Agree Agree x 1
    8. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I would have to disagree here!
      Many don't have cancer, MS or Parkinson's either yet they know what those conditions are, they support charities and participate in events organised by those foundations.
      On the other hand it's very humane that people would want to do something about condition they suffer from.
      Tinnitus community is completely opposite to the rest, we like to complain, sit on our ass and wish for things to happen.
      There is no force or willingness to change anything.
      Another thing is that general public hardly even know what tinnitus is despite being wide spread.
      If the ration is 1 in 10 then that's a hell of a people who have it.
      The trouble is majority of tinnitus cases can be prevented (noise exposure) if there was more awareness happening out there.
       
      • Agree Agree x 1
    9. MikeP505
      Curious

      MikeP505 Member Benefactor

      Location:
      Ontario Canada
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      @valeri

      You seem to have issues with TT and this site for some reason. Many of the users on here like myself have come here to discuss issues with Tinnitus, Sudden Hearing Loss etc and possibly hope to understand it a little more from others who suffer from it. I don't believe for a second we are all sitting on our asses and doing nothing!! Talking to others in similar circumstances is a great beginning to being productive in these issues. As you agree, there is much lack of awareness and funding/research into T and SSHL and forums like this begin the process for many of us trying to learn more and carry forth the word.

      Try not to be so hard on those of us who are doing our best to learn about this issue BEFORE advocating for changes. The more we understand, the more we can do about it in the days and years to come. I was warned as a youngster by my father and other older members of my family that listening to so much loud music would make you deaf one day. It always came down to loud music and not loud environments/working conditions/illnesses etc. As a typical youngster you say..... pffft yea like I care dad! I'll be like 80 and not care by then if I lose some hearing!! Boy was I wrong. Just a normal and typical reaction from a young teen who thought everyone else knew nothing! So awareness has been around longer than you may believe however it has been easily dismissed as something that MAY happen and probably when I am 102 years old!!

      What we need to begin to do is really focus on how the message is spread. How do we get thru young people that like myself at the time, never thought a grown up knew anything? We really need to go right back to STEP #1 and start over if we are to ever decrease the amount of people who suffer these issues. Hearing health needs to be taught in schools the same as oral health and brushing teeth. It needs to begin as early in life as possible or this cycle will never break!! So now the question is...... how do I get up off my ass and have it implemented and taught at a very young age? Your opinion would be greatly helpful....................
       
    10. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Mike I have no issue with TT or this site, just saying what has been observed over the years and many unsuccessful attempts to get people involved to do something.
      Glad to hear you want to help and if that's the case then please contact @Markku and you can discuss it further.
       
      • Agree Agree x 1
    11. Vaba
      Shitfaced

      Vaba Member

      Location:
      New New York
      Tinnitus Since:
      Unknown
      Cause of Tinnitus:
      Unknown. Gradual, Progressive
      Put simply, the lack of awareness is because:

      A: The vast majority of people never develop tinnitus despite their choice of lifestyle.
      B. The people who manage to develop tinnitus often don't care about it.

      A problem arises when someone who is very aware of themselves ("anxious") and highly functional develops tinnitus. If you absolutely 100% require silence and perfect hearing to function, T will destroy you.

      If you don't give a shit that someone is screaming in your ears, you'll be A-OK.

      This is why people think that habituation is the best option. The only way to not let it destroy you is to accept the pain.
       
      • Agree Agree x 1
    12. Cityjohn
      Studious

      Cityjohn Member Team Research

      Location:
      Amsterdam
      Tinnitus Since:
      5:10 PM 03/02/2016
      Cause of Tinnitus:
      Food poisoning.
      Who would you want to make aware of our problem and why?
       
    13. The Red Viper
      Angry

      The Red Viper Member Team Research

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Leftover infection ETD + neck muscle injury
      Spot on.
       
    14. MikeP505
      Curious

      MikeP505 Member Benefactor

      Location:
      Ontario Canada
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      I fully intend to bring forth a petition to Parliament and our Government to help make hearing health as important as any other type of human health. Before standing up in front of the powers that be to argue for change and/or funding for change, I most certainly wish to be as educated in all issues and possible causes for Tinnitus and Hearing Loss.

      The more stories I read, the better aware of just how it really effects our lives I become. So much doom and gloom from those who develop it suddenly and I know exactly how they feel in the beginning. A doctor spends how many years learning to be a doctor? A specialist trains for how long before becoming a specialist? I feel I have much to offer the world in awareness for Tinnitus and SSHL and the drive to make some positive changes ONCE I know as much as I possibly can about these subjects. I need to be fully prepared to give reasonable answers when pressed for my reasons to implement these changes. Otherwise I simply will be ignored as someone who has no real idea what I am doing.

      So I hope everyone keeps posting your stories on Tinnitus and Hearing Loss. I love to know why you believe it may have happened, even if I may not agree. The data collected from this helps to focus on the top reasons for the issues and thus will make it easier to explain a case for change. I seriously do not see a cure in my lifetime but if we can start to change the way we protect our hearing health from a very early age, we may at the very least lower the numbers of those who suffer from it in the years to come. Change will not come overnight nor will it happen in 3 or 5 years. These things take time and effort and must be done properly to be implemented into our lives.

      Stay well everyone and Thank You all for your stories and posts.
       
    15. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Believe it.
       
      • Agree Agree x 2
    16. Foncky
      Doubtful

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2004
      Cause of Tinnitus:
      An explosion, music, and fate.
      T is hell, I agree, but you can't say that. There are millions of people who suffer from diseases we know nothing about.
       
    17. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      - I want society to cater for Tinnitus either through multiple charities offering counselling, practical tips etc. Spreading messages about noise safety, not just from concerts but everywhere.

      - TT is great, however there are lots of opinions on here rather than clear stats. Want to try an alternative treatment? One person endorses it, the other doesn’t. This is where a charity could come in. We need more stats – we on TT go round in circles analyzing symptoms, reading success stories vs failures, which I guess isn't productive. Yet it’s the only place we can go to (thanks to the creators btw).

      - More awareness, more funds, more help. More awareness, more funds, a cure. Clearly prevention too.

      - All the pain on this site has to be channeled into something – a petition, what can we do given that we all live in different states? Please let's do something. Any ideas welcome. Also anyone know when Tinnitus Hub will be live? Looks great.

      @Vaba - get what you are saying, however again not sure about the stats of people who actually habituate, what kind of T are they habituating to.
      Do we need perfect hearing to function, no...but we are attaching a different meaning to this, at least us on TT. Is this because we are newor highly anxious and attaching a meaning to T? Would be interesting to profile people, another stat that I am missing.
      Also on a different note had been reading about your story the last few weeks, your Italian lineage (like mine) and glad you had a good time at your party!
       
    18. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Take the lead, my friend...
       
      • Agree Agree x 1
    19. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I wouldn't put it in these exact words. I understand the sentiment, but I think a more accurate way of saying this is that we are clamoring for awareness because we now know about this condition (since we have it). Had we known about the condition before having it, I am sure a fraction of us would have tried to raise awareness, much like you raise awareness about any other condition on the planet, even if you don't suffer from it. If people at large were aware of how horrible this is, there would be a fraction of the population that would mobilize to help (starting with family members of sufferers, extended to social networks, health activists, etc...)

      The issue about taking action is a bit different. People who have debilitating ailments aren't the ones taking action generally, because by definition, they are debilitated. The people debilitated by a cancer aren't the one "doing", because they can't. They have advocates who are in much better health do it for them.

      The catch 22 is that in order to be super motivated to do something about T, you have to have a debilitating version of T, and that prevents you from executing with energy. Since T is "invisible", getting others to be your advocates is quite hard.

      Yes, there are people that do like to complain and won't execute, whether sick or healthy, but painting T sufferers this way glosses over the very challenges of this condition.
       
      • Agree Agree x 1
    20. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      The last sentence may be true, but you also can't say that, by definition: if you know nothing about a disease, then you don't know how many people suffer from it.

      I don't know many horrible conditions that aren't really "on the map", like tinnitus. But that's kind of self evident, right? If they were on the map, there's a chance I'd know about them. I wouldn't be surprised if there were many, and that would be a sad state of affairs (like T).
       
    21. ehrfried

      ehrfried Member

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Club
      It is probably even a lot easier than writing letters to the EU.

      For a first step, paper and TV ads from earplug companies are an option.
       
    22. Foncky
      Doubtful

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2004
      Cause of Tinnitus:
      An explosion, music, and fate.
      Sorry, I was not clear. I meant there are a lot of horrible diseases that we can't cure at all and that are not really "on the map".
      You can read the story of Marieke Vervoort for instance. She's a great athlete but her body is dying from inside, and nobody can help. Her life is a succession of gold medals and suffering. Mostly suffering actually.

      Tinnitus is quite on the map nowadays, because hearing loss is.
       
    23. Karel
      Stressed

      Karel Member

      Location:
      Netherlands
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      acoustic trauma
      The thing is, people with T don't look sick. No wounds, no crutches, no hospital visits. It also doesn't kill anybody, at least not directly. And if someone takes their life because of their T it will probably just be written off to depression or some other psychological problem. Lastly, there's many people who have very mild T, which makes the general public see it as an annoyance and not as a debilitating disease. "Oh, buzzing in your head? Yeah, I have that too, I sometimes hear it at night." Not realising there's Tinnitus and there's TINNITUS..
      Would be great if there could be some campaigns to make people understand how serious this condition can be. I don't even remember hearing the word 'Tinnitus' before I got it myself.
      And don't even get me started on Hyperacusis.. even the doctors barely know what that is.
       
      • Agree Agree x 2
    24. Foncky
      Doubtful

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2004
      Cause of Tinnitus:
      An explosion, music, and fate.
      No awareness is entirely our fault.

      Even among the TT members, thing are not clear. There is always someone here to write "Yeah, fuck my T, I went for a helicopter tour and it was fine, I wish you all do the same !", or "Anxiety is the problem guys, try to reduce it !".

      Not realising there's tinnitus and TINNITUS, or hyperacusis and HYPERACUSIS, or TINNITUS + HYPERACUSIS + HEARING LOSS + CONSTANT PAIN.

      It does not help our cause at all. We, the sufferers, are the first to share the idea that we should stop complaining and get on with our lives. While the real thing we need is a medical cure.

      I've had mild T and H for 12 years. I never felt the need to subscribe here until it all went mad after a new acoustic trauma. Now I realize we need someone strong to lead us to awareness and to a cure. Often, all it takes to change history is only one person. I hope this person exists already.
       
      • Genius Genius x 1
    25. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      I agree with @GregCA that the debilitated sufferer can find it hard to come up with something - personally getting through the day is a struggle. I am down beyond belief, on the verge of tears all day long. If I could do something positive it might feel like there is a meaning to all this mess. Maybe if we all did a little something...We could come up with ideas and maybe spread the load on the site...feel so helpless, cried to my mum (I am a 41 yr old mother myself) all yesterday afternoon.
       
    26. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Clearly the fact that we lump all T sufferers together doesn't help. If only there was another medical term for TINNITUS (vs tinnitus), like "Mega-T".
      "Do you suffer from tinnitus?" - "No, I have Mega-T"
       
      • Agree Agree x 1
    27. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      As I crossed the road today @GregCA thought the exact same thing! A different name is what we need!! Genius we're onto something.
       
    28. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Agreed. However, there are teams that members can join - and - I would assume that people wouldn't join a team unless they have an intention of contributing towards the mission of that unit. So why not ask for an update from the teams on the forum (to see what they are up to) - here they are:

      @Team Awareness
      @Team Research
      @Team Tech
      @Team Trobalt
       
      • Like Like x 1
    29. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Good idea...
       
    30. Karel
      Stressed

      Karel Member

      Location:
      Netherlands
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      acoustic trauma
      That's actually a really good idea. Tinnitus Magnus? Tinnitus Gravis? Tinnitus Atrocis? :pompous: (I don't actually speak Latin, I used an online dictionary. :D) Being able to distinguish between the 'mild annoyance' T and the 'life disrupting' T would be a very good start anyway.
       

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